Things have not been great since I posted last week.
On Monday I emailed my doctors a few questions to get a better idea of what might come along with my different options. One of the questions I asked was, what if we do nothing, how long until my disease becomes life-threatening? And the answer is months. It’s a range, so they don’t necessarily mean the 2-3 your brain may jump to, just that it won’t be years. I was shocked by the reply. My body feels fine, how can my tiny cancer grow and ruin it so fast? I don’t know and don’t want to, I just hate it. Anytime I try to process it I think of EOL, so I will be working on all that paperwork soon.
Since I do not feel done yet, my only option is a clinical trial. I have already been contacted by the team in San Antonio and will go visit them next week. I am still waiting to be contacted by MD Anderson, where I have to have an initial visit with my “current” oncologist and then I’ll go home and he will refer me to the phase 1 team. Bureaucracy will bureaucrat and then I go back for an appointment with the clinical trial team. This all means that there are multiple options available to me. I will be in a clinical trial. We just don’t know which one yet.
One bummer thing I have had to talk with some members of my team about is false optimism. There’s research showing that as you near EOL, doctors you have a close relationship with may be more optimistic than called for, because they personally don’t want anything bad to happen to you. And since my doctor ended a phone call with me this week by saying, “I love you” I think I have a reason to be concerned. I had team members reassure me that they are aware and worried, too, about whether I’ll get accurate info. We have a few doctors at the clinic that we are maintaining a distance from so they can be there later to give unbiased opinions on my case. It’s a relief to know my clinic was already ahead of me on this.
Now is when I usually post a moment of joy from the week. It was a nice weekend with my family. We watch a midday movie on Sundays that one of the grown-ups picks, generally rewatches of things from our youths. This week my husband picked the little known move Brain Donors and it made my daughter laugh so hard. I love when she just giggles and giggles.
Dear Christina,
You have had a difficult week for sure. It’s interesting how incredibly educated one has to be to navigate this disease and also the system. It’s actually a full time job. I am a nurse and a mental health therapist and I well know how
clients/patients can become
special and there can be blurred
boundaries which then makes the
objectivity difficult albeit so
important….even just to get an real
view of how things are going.
I loved reading about your daughter giggling and how you are able to enjoy her.
Thank you for your writing and willingness to share this experience.
LikeLike
Janny, you are so right that it is a full-time job. It was maybe part-time when I was first diagnosed but as time goes on and I have more side effects to deal with via other specialists, and the time spent educating myself, it is a full-time job. It feels like I should have so much free time but I definitely don’t.
I do love my oncologist, too, and am glad to have a team that cares about me. But yes, I need some objectivity.
Thank you for reading along. I know that there’s not much insight into this experience out there in the world and I want people to be able to know about it if they want to.
LikeLike
I don’t have much to say right now, other than I think about you every day. Thank you for continuing to share all you do with us.
LikeLike
Thank you ❤
LikeLike